My Doctor Said today that maybe it was anxiety causing my TN. and that If I was having pain on the on both side of my face that I did not have trigemnial neuralgia I had atypical face pain I started out have electric shocks on my left sit after going on Gabapenin I now only get them once in a while but I get mild spasm followed by boring burning aching pain.on both sides of my face, so she said I do not have TN. She also said it is OK to take my gabapenin once a day instead of 2 or 3 times a day that it stays in the system for 24 hours I thought it only stayed in the system for about 5-8 hours I thought it was best to keep a consistant level in your body I had been taking 300mg twice a day and now she wants me to take 800mg once a day I think she is nuts but I could be wrong. She also said that if I went on Tegetol it would be a low dose and I would not need blood testing I think she is wrong. I could be wrong again but everyone and everything I have read says different. I think I need a new Neurologist
I began with the electric shocks this then thankfully stopped but then I had the boring aching feeling. I understand This is TN1 followed by TN2 which can happen. Doctors here seem to understand TN1 better then TN2. I did find Amptriptyline before bed helped my TN2 as it was at bedtime that it bothered me most.
Sorry, your neuro is wrong. You absolutely can have TN bilaterally and we have over 100 members who do have this. Agree, you do need a new neuro and she needs re-training!
You may tell your present doctor when you fire her for incompetence, that there IS no such mythical medical entity as "Atypical Facial Pain" and there isn't one scrap of evidence that anxiety can "cause" TN even though it may be a trigger for some attacks. Likewise, the half life of Gabapentin in the bloodstream is a few hours. This idiot needs to be placed under supervision and retrained before she really hurts somebody with her ignorance.
My point was that it is apparent your doctor knows nothing - so here -- the PATIENT has to educate ourselves and then hopefully work with a competent doctor!
You may tell your present doctor when you fire her for incompetence, that there IS no such mythical medical entity as "Atypical Facial Pain" and there isn't one scrap of evidence that anxiety can "cause" TN even though it may be a trigger for some attacks. Likewise, the half life of Gabapentin in the bloodstream is a few hours. This idiot needs to be placed under supervision and retrained before she really hurts somebody with her ignorance.
Regards, Red
Thank you Red that is how I feel about her also I had done a lot of research on here and the internet and have talked to other paitents with TN on the phone and have tried to educate myself but was starting to doubt myself than you for the support it really helps
Thank you everyone for your replies. I feel much better knowing that I am not the confused one that my doctor is I will be looking for a new doctor I had already started my search and saw another doctor that was so verbally abusive and rude that I will not be seeing him again either but i will continue my search for a better doctor. God Bless you all
I’m sorry you had to experience that!
I too had heard ten yrs ago that it was anxiety. And that bilateral TN is rare so I couldn’t possibly have that!
Ugh! Frustrates me so much!
It took some time, but I eventually found a fabulous neurologist!
Don’t give up! Keep advocating for yourself, I know it’s hard, especially while suffering with pain, but you deserve pain relief and a medical professional who has a good understanding of TN !
((( hugs )))
I had the least amount of stress in my life that I have ever had, I had just bought a house and was happier than I have ever been, then this struck, so saying it is stress related seems like bull to me. I also have it bilaterally, so no, its not a myth or in your head. Nothing pisses me off more than someone saying that stress or that you yourself is causing this or any other disorder. To me , anyone that says that doesnt have a freaking idea what they are doing. It really pisses me off that a doctor treated you like that.
I have both TN 1 and TN 2. Your doctor is incompetent and you definitely need a new neurologist. I don’t believe that anxiety is the cause to TN, completely bullshit from a doctor’s mouth.
Have you looked into getting a second opinion yet? My first referral Dr was not up to par and definitely not a people person. I was totally stressing because I was not getting answers and felt like he was dismissing everything I was feeling. My second Dr was a God send! He took the time to listen. I can go on forever with this but you are the one that have to be comfortable with your Dr and feel that that Dr has your best interest and well being!
I have gone for one second opinion and believe it or not he was worse than the first one he was so rude and verbally abusive and would not lety ou finish a sentence I almost gave him the finger and walked out and I am not person to loose my temper I do have another appointement scheduled to meet another Neurologist if anyone has one they would like to recocomend in the phoenix AZ I would be grateful. The hard part is finding a good one on my insurance list. Thank you for your support.
TNNME said:
Have you looked into getting a second opinion yet? My first referral Dr was not up to par and definitely not a people person. I was totally stressing because I was not getting answers and felt like he was dismissing everything I was feeling. My second Dr was a God send! He took the time to listen. I can go on forever with this but you are the one that have to be comfortable with your Dr and feel that that Dr has your best interest and well being!
I just twitted out, if that is the proper way to say, I asked anyone on twitter if they can recommend a Neurologist in your area. It's bad enough to be going through the pain, we really don't need the extra stress, especially from a DR!
Stay strong and be determine to find one that you are comfortable with and again one that has your best interest and well being. I'll keep you posted if I get a hit on twitter or you can follow me. TNNME. Have a blessed night!
Thank You It is hard finding one that is on my insurance I can not afford to go out of network on my insurance it would be a quite expensive my deductable are high So I will keep trying and looking in the mean time at least the Doctor I have keeps me on the Gabapentin she told me to take the 400Mg once a day I take one in the morning and one at night It is helping so until I find a new one I am doing OK I guess
TNNME said:
I just twitted out, if that is the proper way to say, I asked anyone on twitter if they can recommend a Neurologist in your area. It's bad enough to be going through the pain, we really don't need the extra stress, especially from a DR!
Stay strong and be determine to find one that you are comfortable with and again one that has your best interest and well being. I'll keep you posted if I get a hit on twitter or you can follow me. TNNME. Have a blessed night!
Another approach to finding a doctor is to search Google for "Top 100 Doctors" and "by specialty". Several of the online lists are organized by state and locality.